Monday, November 30, 2009

Fighting the Fight

Trying to, that is. A losing battle it has become.

I haven't posted in several weeks. I make attempts to sit down & blog, but nothing comes. I have lots to blog about, but can't make my finger move over the keys to bring out the words.

What fight am I fighting, but not winning?

Yep, those three nasty enemies of mine are trying to take over again. Depression, anxiety & insomnia.

Now, most of my personal issues are job related. My work has been super hectic. We have a lot of BS coming from management as well. There is just no time or place to decompress there. We are literally being trusted to manage people's life support, yet we aren't allowed to manage our own breaks at the moment. I have worked as a professional snot sucker for more than 15 years (makes me sound old!!!). I have never been treated so child-like in my career and I find it to be degrading. I came closerthanthis to quitting the other day, but I can't. I am stuck.

I need the FMLA for MM. If I go somewhere else, I will not have that for a year. She can't afford to be out of therapy that long. I need the insurance. Although I pay out the nose, I do have pretty decent insurance. Her health (and mine) desperately need it. If we could live without the money, I would. There just isn't any way unless we live off of assistance, which I am too proud to do. However, with me feeling like my sanity is in question, I wonder if I might get declared crazy & get that check any way.

Autie has been especially trying for the last two months or so. Her legs are getting tight. She is rotating in more. I am sad cause we are at the age where they told us she "wouldn't be able to be picked out of a crowd". WRONG! We are still dealing with all of this. Her wheelchair should be in in the next few weeks. DH is adamant about not using it. I had to carry her for several city blocks the other day & messed up my back. She is too big, too heavy & too stiff for me to carry around all the time now. She refuses to ride in her pushchair (aka stroller per her), so I get stuck carrying her.

I wish I could come to the place of total acceptance and stay there. It seems that any little thing in life can push me down when I least expect it. Evals came in along with the time of year when our first lost LB should have been born and the crap at work. BOOM! One step forward, two steps back. I envy so many of you here in bloggy land who are able to post so eloquently & deal with their child's disabilities with such grace. I have none. I am a bull in a China shop that can't seem to get it under control.

I feel myself sinking back into that black hole. I don't want to go back there. It is the holidays, I have so much to do. I am forcing myself to go through the steps, but I feel void of emotion. There are some good things happening around here, it just feels hard to celebrate when you are fighting. I just don't want to be in this life right now. I want to run away. I can't, but want to desperately.

Sunday, November 8, 2009

Defeated

Autism, you win this weekend. I am beat down, wore down, exhausted & brokenhearted.

I am in desperate need of a break from it all. I don't know how, when or where I can get one. Actually, ASD has been winning the past few weeks. It has gone from bad to worse. It is so sad to be praying she is getting sick & that would explain why she has been so out of sync, stimming & just "not here".

I am scared I am losing her. I know that I have said this before. She has always "come back" to her degree, but it terrifies me each & every time. I keep questioning myself: Is this it?

We also got a rough report from school on her behavior. Therapy evals are in for our private PT, OT. Very little gains made. Still stuck in the same age month we have been in forever. I am getting the feeling that this is as good as it gets. She is 6 1/2. We are still stuck around the 36 months mark motorically (just made up my own word). Am I wasting my time & money going to therapy every week?

I know so many of you would trade places with me in a heartbeat to even get here.

Just whining.

Saturday, November 7, 2009

Dear Blogger

I am getting really sick & tired of all the spamming comments. I have to leave comment moderation on @ all times due to the ridiculous amount of comments I get in Chinese for p.or.n or in Mexican for v.iag.ra. It's sofa king annoying. I am truly getting over it. I am so mad, I am thinking of moving to wor.dpr.ess. PLEASE fix this!

Thank you. That is all.

Monday, November 2, 2009

Literally Autism

MM: Mom, we live green.
Me: Yes, MM, we do.
MM: Mom, we live green
(this repeated about 20 times)
Me: Yes, honey, we certainly do try to live green.
MM: But I sleep pink.


MM: Mom, did you know that my school is on Tipton.
Me: Yes, MM, I realize that.
MM: You "reckon"?
Me: What?
MM: That means do you recognize.
Me: I know what it means. That isn't proper English, that is southern slang. We really shouldn't say it.
MM: Ok, I recognize not to say it.
(I am sure more southern colloquialisms are to come & be explained since DH & I speak "northern")

While doing homework:
"Make words in the -ish family"
MM: Wish
Me: Very good. Can you think of another?
(I am thinking a 6 year old way, anticipating fish or dish)
MM: Irish, like me. Capital I- r
(she obviously has read the family crest we have on the wall, but we have never discussed with her)

Wednesday, October 14, 2009

In Typical M Family Style

As you know, whenever I take time off, something happens.

We are not on our way to the buckeye state right now. MM was sent to school. Why are we not on the road? Nana is sick. Yep. Nana, who NEVER gets sick, has a bug. I don't know if it is HoNo, but she is definitely sick. Fever, achy, vomiting. Blah! I am over here nursing her right now & willing her to get better.

I reeeeeeeeeeaaaaaaaaaaaaaaaaaalllllllllllllllllllllllllllllllllllllllllly want to go see my sister & grandma. I just don't think I can handle MM alone on a road trip. I don't know how she would do. She gets easily stressed out by my pure boy nephew who bounces around with endless energy. She would be stressed from a change in scenery. She would be stressed from seeing people she hasn't seen in years. I would have no one to lean on to help when my patience are thin. My sister would try to help, but MM doesn't know her that well.

I am afraid of being alone with my child away from home.

That is such a sad statement.
Thanks for nothing Autism.

Monday, October 12, 2009

Still Here

Long time, no posts, eh? Been busy & just not feeling like typing much.

First of all, MM survived the HoNo virus. Many days of high fever, lots of vomiting, lots of refusing to drink & even more defiance with taking Tami.flu. She missed a whole week of school. I did not get it. People were freaking out cause she had it. Everyone seems to forget that she DOES have an undiagnosed autoimmune disorder. That is why her's was so bad. We did not get the wonderful clearing that comes after she has a fever. Can't say I wasn't a little disappointed in that. The important thing is that we recovered.

She has decided to participate in a sporting activity. We offered everything under the sun: soccer, cheerleading, gymnastics, etc. What does she pick? Baton twirling or as she calls it "majorettes". We found a really kind lady who teaches here in town. Guess what? She LOVES it. She goes Tuesday evenings. It has been so good for her. All I can think of is where else can you get therapy for $7/ 30 minute session. She must work on motoring planning, fine motor with her hands, gross motor with the routines, tolerating noise of music & echoes in the gym, socialization with the other girls & letting them get into her space. It works all areas for the bargain price of $7! Can't beat it! I have a video, although it is grainy. Any one wanting to see it? Let me know & I will post it.

IEP. It went well. Yes, you read that right. IT WENT WELL. I thought there was going to be nashing of teeth, pulling of hair & tears. Nope. Not at all. The regular ed teacher did not understand her IEP. She does now. The OT & SL/T were spot on in helping to get her what she needs. She now has her very own special modified & adapted desk. She has a label maker, a computer, a new program for typing & will be getting her assignments changed to the computer. They are finally recognizing she has dyspraxia in regards to writing. It's not that she doesn't know, she just can't get her hands to do what her brain wants. Setting these things in place has made it much easier to send her to school. She was not wanting to go & melting down about it. Now, not any more problems. We addressed the bus issues & they are working on the lunch room problems. I really feel the therapists that have worked with MM really have a good grasp on things. They know us now & know we pull no punches, are not lazy & really care about her well being. They complimented us over & over on how well she is doing & how hard we worked with her over the summer. Nice. BUT, does not make up for them not giving her ESY! The principal is not my favorite person. She tries to stonewall so much & I know it is based on money. She kept telling us that they do not make the things we are asking for. She is full of bull & I called her on it. I know they do cause I have friends whose children one county over have it! DUH! Also, we researched after finding it out! I think I might ask for HER boss to sit in on the next meeting. They are also going to be doing her re-evals cause it has been over 3 years since she entered the public school system. Times flies when you are having fun-NOT! We will see what their results net.

Work has been hell with all the flu. I am exhausted when I get home. It is only going to get worse as the season goes. I will survive. BUT I am off for the next two weeks! Woohoo! I am taking MM on a little road trip the old homestead to visit family & friends. I hope she does okay. We are then having a Halloween party too. I dont know why I take on so much sometimes, but hey- you only live once!

Thanks for checking in on us. Cheapskate mom, I need my code for my button still! LOL She makes some really cute buttons for people to grab for your blog! It is a bargain too! Check out the link! Later!

Monday, September 21, 2009

HO-NO!

That is what I am calling this thing known as H-one N-one. Well, I was joking & laughing about it. It's not so funny any more. Thanks to a certain auto immune disorder, we have one sick little girl here. We are at home, but might need to go in for IV fluids. She is a raging high fever, vomiting, coughing, runny nose, lethargic mess. We went to the doc today & they are almost positive it is HoNo! She definitely has type A flu, which odds are is HoNo. She was placed on Tamiflu, tylenol suppositories. They can't even give her any zofran cause she can't keep it down. Phenergan is out of the realm after this happened last time. We watch, medicate & wait. They are worried she will get pneumonia. I hope not.

I am on meds too in hopes I don't get it. That would be a dangerous mix with my asthma.

And along the lines of HO NO, we have an IEP Wednesday morning. There are so many crappy things going on with school. I do not have time to go into it now. Just wanted to let you all know we are alive.

Wednesday, September 2, 2009

Literally Autism

MM: Mommy, I done. Mommy, wipe my butt now.
Me: Whoa, MM, that is a big turd.
MM: Why thank you (said in her most polite sweet voice as if being told she is pretty or something we have taught her to respond to)


MM: Pop-pop went to NAPA on Cherry St.
Me: No, he didn't. It wasn't on Cherry St. He ended up going to the one on Middlebrook
MM: He took Exit 386A Middlebrook Pike
(She told me this AFTER my dad called for directions & I wasn't sure if there even was an exit for that road)
Who needs a Tom.Tom when you got a MegMeg?



MM: Smell Katrina's feet. (katrina is her baby doll)
Me: ::::::smelling doll's feet:::::::: Peeeeeeeeeeeuuuuuuuuuuuuuuuu
MM: She has a fungus among us. It's a dermatophyte. She needs lamasil A T.
This game was repeated about 5 million times this week.

Saturday, August 29, 2009

PTSD

Sometimes, life is full of irony. Just yesterday, my mom & I were talking about the NICU. One of my best friends at work has started working in there. She keeps asking me to come back & work up there with her. I keep telling her I just can't. She says sure you can, come on. My mom said "I think you have some Post Traumatic Stress from the whole situation with MM". I tell her maybe & we move on to another subject.

Today, Ellen posted a blog about an article on NICU & PTSD. It is a very interesting article. As I read it, some things really screamed out at me. (I am condensing parts, so it is not direct quotes from the article)

"Experts say parents of NICU infants experience multiple traumas, beginning with the early delivery, which is often unexpected. The second trauma is seeing their own infant having traumatic medical procedures and life-threatening events. And third, they often are given serial bad news. The bad news keeps coming. It’s different from a car accident or an assault or rape where you get a single trauma and it’s over and you have to deal with it. With a preemie, every time you see your baby the experience comes up again.”

Absofreakinlutely. Even six years later, I still feel traumatized. An emergent c-section & she was whisked away, not to be seen for over 12 hours by me. I still carry anger over that. I didn't change her first diaper, help with her first bath, offer her comfort when she cried. Some one else did those things. She spent her first night in this world with strangers. Some days, I can't look at her without thinking of her in that damn plastic box with doors. I couldn't hardly hold her, only touch her through those doors. I remember the IV in her head that made her cringe & it was blown. I told the nurse, she wouldn't listen. I stood there, watching the nurse attempt to flush it & saw my baby literally push up so hard from pain she hit the top of the incubator. I was told I couldn't rock her cause preemies don't like vestibular movement. It just kept on & on & on. I carry that scab with me. I wish it were just a scar, but I must say it is still a scab. Granted, it is getting to be a crusty old scab.

"The Stanford study found that although none of the fathers experienced acute stress symptoms while their child was in the NICU, they actually had higher rates of post-traumatic stress than the mothers when they were followed up later. It may be that cultural roles compel the men to keep a brave front during the trauma to support their partners, Dr. Shaw said, adding, “But three months later, when the mothers have recovered, that’s when the fathers are allowed to fall apart.”

This sounds familiar. DH didn't really come to terms with all of this until fairly recently. I often just think he is keeping his head in the sand. Maybe not. Thanks NYTimes for giving me a different perspective on this. I need to be more patient with him, for he is suffering through this just as much as me.

"Later, mothers might experience “vulnerable child syndrome,” in which they become so anxious that a minor medical event sends them into a panic. Normal, everyday risks can seem life-threatening; “From the moment of their birth, and still to this day, we feel like we’re triaging everything and just hanging on"

I KNOW I suffer from the vulnerable child thing. A fever can send me over the edge with anxiety, stomach acid burning my throat, waiting for something bad to happen. It is never an easy illness for her, either due to her sensory stuff from ASD or she is really, really sick from her auto immune issues. I am also turdified she is going to have a seizure. She has NEVER had one, but kids with ASD and/or CP have a higher risk to have them. The hits keep coming too. I have recently learned that they can add another diagnosis to your child, even this late in the game. I do have to triage everything in her life: appointments, therapy, school. Which is more important? What do I need to focus on and what can I blow off? Although, I feel like I can't blow anything off for fear of not doing enough for her. I beat myself up pretty bad when it comes to her. How many times have I said I feel like I am just hanging on by a thread.

Now, I know why. I have had therapy. I can't remember if the therapist said anything about PTSD. It just hasn't really dawned on me. Until now.

So, can I go back and work in the NICU?

I. Just. Can't.

Sunday, August 23, 2009

PSA- off topic

I know my blog is about family, special needs, ASD, CP, etc, but the more I think about this, the more I have to sound off.

I have a friend who did an interview for a blog. She was asked some questions and answered them honestly, from her heart. She was in no way being offensive to any one. She was also stating an opinion. Of course, we all know there are trolls out there, lurking, waiting to attack at any moment. There was a comment left by a person who did not appear to be a troll. The person, however, did become offended by her opinion and went on to attack her in the comments & then in a post on her blog. My friend then felt the need to apologize profusely to this person & then posted an apology on her blog, feeling as if she had to do PR cause she is getting to be high profile.

I realize that the blogosphere reaches world wide. However, she & the commenter both live in the US of A. A place where we have the first amendment, entitling us to freedom of speech. See that first word there? Freedom. I am finding as I continue my adventures in blogging that many become offended by an opinion. I don't think there is anything wrong with having an opinion on a subject, one way or the other. As long as one is not spewing forth intentional hurt to others, I see no reason to attack. One should be able to state their counter opinion without being hurtful to the other person. Don't attack the person, argue your opinion. Simple points of debating 101.

It seems to me that we are causing ourselves to lose our freedom of speech. With so much political correctness, we have to censor ourselves so much. We are afraid to stand up for anything in fear of being criticized or attacked. I think that is why so many other countries hate us- we don't stand for anything. We back down. The principles this country was founded on have been compromised in the name of political correctness.

I believe you can't please everybody all of the time. However, please don't infringe on some one's freedom of speech. State your opinion, maybe use it as an opportunity to educate & move on. And as always....

If you don't like it, don't read it!

End of PSA

Thursday, August 20, 2009

The Party, The Bus & Other Fuss

I left it up to MM to decide about the party. She chose to go when she found out swimming was involved. I was so very proud of her for choosing to go to the party. It wasn't as bad as I imagined it was going to be. She enjoyed herself swimming. She swam through the crowds of people. She jumped off the diving board several times. She tried to cannon ball like the men were doing. She tried to give her mom a heart attack by wanting to go off backwards like the men. I am all for trying new things, but I wasn't ready for THAT! She enjoyed whacking the pinata. I only got a little sad a few times. First, when I saw all the other moms congregated talking while their children played with each other. I had to run interference for MM & she wanted me right there with her. Second, when all the children lined up to make their own cupcakes. Of course, they had a blast, getting frosting & sprinkles everywhere. She would have none of that, choosing to leave her cupcake plain & go inside for a glass of milk. The last time was when the pinata finally got opened. All the children jumped on the candy, she got pushed back & then just stood there. I finally reached down & grabbed the pinata to shake out some stuff for her. She doesn't even eat candy, but I want her to participate as much as she can. She was excited to pick up some stuff. She is also not greedy when it comes to stuff like that, only taking 3 pieces. That made me proud. All in all, not too painful. I also got a pretty nice tan out of it- BONUS!

School has started. I took her the first day. It was only a half day. She did well, even telling me she was "settled". I asked if I could go & she said "sure". I picked her up. She kept saying over & over she was a first grader. Day two she rode the bus to & from school. It seemed to go okay. She is very stimmy when she gets home & starving as well. The afternoons have been spent hearing her say "I not bossy" over & over for HOURS! She is not eating all that well at home or at school. This is normal for her until she adjusts. Haven't heard from the teacher which I do not like, but will set up a system with her next week. We will have a team meeting next week to discuss how it is going for her. The OT & PT have been quick to point out the fact she has no DAFOs on her feet. The short bus, which is now a big short bus, backs up the road every morning & afternoon. The bus owner was a little concerned about traffic letting the bus driver back up. He said he would get the police out there daily to direct traffic if need be. All I could think of is: GREAT! It's not enough we have the short bus pulling up everyday to draw attention, now we will have the police too. Thank goodness it doesn't seem to be a problem so far.

The DAFOs are being replaced for the third time. We are going back to what we had. We went yesterday to be recasted. She complained often about her feet being tired. She would even say her feet hurt, which is quite unusual for Miss HighPainThreshold. The PT wanted to have another strap added to them. We had them adjusted, redone, padding added, cut down. They kept leaving red marks on her ankles. The orothotist said no, enough is enough. She obviously still need the extra support, having to adjust them that much is not acceptable for a custom brace, put her back in what she had. The doc was called & she confirmed our decision. Sorry, PT, sometimes Mommy, Daddy & Nana know best. The orthotist is putting a rush on them, so hopefully they will be her next week.

This is getting lengthy, so I will wrap this up with one last thing. I had a comment left a few weeks ago about joining a health community. After being reviewed by the CEO of the site, I was accepted. I am know officially a member of the ASD community on there. See the new button over there on the left -------->? Pretty cool, huh? It will upload my blog posts there for people to read & send them here. On top of being a featured friend and now this, I expect my traffic to pick up even more. I am excited to connect with more people here in the blogosphere. At first, I just wanted my little blog here, in my little space, to have a place to write my thoughts. I have even told some people IRL about my blog that I wanted to keep a secret. I can't believe that people actually want to read these (crazy) thoughts!

She is almost done with therapy. Hurray for free wi-fi so I could update. Working the weekend, so don't be surprised if I am not around.

Wednesday, August 19, 2009

Update

I know many of you are waiting for an update about the party & school. I will be back later today or tomorrow to give you one. I have been working & things have been HECTIC!

Saturday, August 15, 2009

What to do?

It is Saturday. What do thousands of children do on a Saturday afternoon? They attend a birthday party they were invited to. We were invited to my friend's daughter's first birthday party. I would have absolutely no hesitation in going if it were just my coworkers & her family. They are used to MM & understand her. However, her DH's family will be there as well as some of his friends & their families. People who don't know MM or anything about her. Strangers stress her. Stranger's children really stress her. She is already in full on ASD mode this morning. I will feel bad if I do not attend.

I just don't feel like being the poster child for autism today. I am not in the mood to answer questions, ignore the stares, work on calming her & just be stressed the whole party. It is not fun for me. I think I would be resisting the urge to give out my smart a$$ answers rather than being kind.

Some days I just can't. I think it might be one of those days. I am fighting the funk about this. I just want to climb in bed with the covers over my head & have a good cry. It makes me sad that we can't just load up & go to a birthday party. I don't know if I want to see all the NT children (neuro typical to all of my new followers) running around, care free, no problems.

Something so simple for most and not so for us.

Friday, August 14, 2009

StressFest '09-'10 (aka School Year '09-'10)

Yes, it is about to begin. She starts Monday. Today was her last day of her summer school.

I think we are ready.

School supplies have been bought. Clothing needs have been assessed. We got a call from the bus owner today. She will have the same driver as last year- we LOVED her. We went by today & met her teacher. We also saw all of her other teachers & aides from the last two years. We saw the classroom. She picked her desk. They have most of her equipment ready for her in the room. They are more prepared this year for her.

I think they are ready.

I am actually excited for school to start.

I can't believe I just typed that sentence. It seems things are starting off on the right foot for once. It is almost too perfect. ::::looking around for that other shoe to drop:::::::

Here's to First Grade!

Tuesday, August 11, 2009

Look At MEEEEE!!!


Yes, this little ol' blog of mine is getting some cool exposure. A really fun blogger, Tamara, of Mad Boastings of a Cheapskate Mom, has decided to make me one of her Featured Friends! I captioned one of her many funny pics that she posts & my quote got picked. I have blogged about her contests, this is her newest one! Her blog is not a SNK blog, although she just joined the club with her son's new diagnosis of PDD-NOS. She has a lot of humor (her stories of her weiner dogs crap me up) & some really great advice (it is not ASSvice- see the post below this) on how to save money. She has recently gotten some MEGA- exposure on her blog! She is such a talented writer. I am very honored to be a part of this.

She also made my own cool little button so it can be "grabbed"! See it up there? Cooooolsville, daddy-O. Now, I just need to figure out how to do that! LOL!


Monday, August 10, 2009

Opinions are like...

As one blogger that I love to read calls it "Ass-vice". People are always full of it, willing to dish it out, even when not elicited. I suppose most mean well or are truly trying to help. I just don't know about it.

For example, my mother's friend (who also happens to be a nurse & is well aware of MM's disabilities) came into town. This lady has been a friend of my mother's for years & I really do adore her. She is quick witted, funny & sarcastic- my kind of humor for sure. MM knows of the friend, but is not familiar with her. She spent an hour with MM & I this morning. She was in full on ASD mode, complete with vocal ticks and flapping. To some, her voice & actions appear to be naughty behavior. She was very patient with her, which is unusual for those who don't really know her. She did a great job of ignoring the stims, tried to engage her & just generally appeared at ease with the situation (we went out to a restaurant for breakfast that is very small & we were the only ones in there to help out MM). Overall, it was a nice, short visit for MM. She tolerated her well.

After dropping off MM at school, she then proceeded to deal out the assvice. This wasn't something I would normally expect from her. At first, she told me what an amazing job I was doing. Thanks. No problem with that comment. She then gave me the standard God knows who to give the special kids to, etc. Although always well intended, it doesn't really ring true to me. Next came my favorites. She looks just like any other kid, just a little weird. Okay. Is she supposed to look horrible? She will grow up to be just fine. She will surprise you by the time she is sixteen. You won't be able to pick her out of a crowd. She will have a job & everything. You will truly be amazed, don't ever doubt her or give up on her. STOP RIGHT THERE! YOU HAVE A FRIGGIN' CRYSTAL BALL? WOW! I CAN'T BELIEVE IT. I am so glad you came into town to spend this hour with my child & tell me these things. I didn't realize that all of the hard work, hours of therapy, money spent, fighting with the schools & insurance companies, pushing, pushing, pushing was doubting & giving up on her. I have never believed she could surprise me since she has proved everyone wrong since the day she was born. I was definitely giving up on her at age 6, but since you just told me all of this, I guess I will keep working with her.

I just can't believe that in a mere decade, everything will be okay. So, now I have a time line of when my stress will be gone & our happily ever after will begin.

End of sarcasm.


Sometimes, I think a book needs to be written of things NOT to say to parents of SNK & what the right things are to say. I am sure it is out there somewhere and if not, it needs to be. How about posting your best ASSvice received in regards to your child or any thing else in your life?

Wednesday, August 5, 2009

Sounds Interesting

I came across this interesting article today.

I am not really sure what I think of this. The education system early on is wanting LRE/Mainstreaming. Yet, here is a college doing the exact opposite. I will have to keep a close on eye on this cause we have about 12 years until college. Maybe less with the genius here!

Saturday, August 1, 2009

Literally Autism

Me: Did you toot?
MM: No
Me: Yes you did. Peeeuuuuuu. That is really stinky.
MM: Why thank you.

While playing the new Wi.i Re.sort Game:
MM: Let's play the skydiving game.
Daddy: Get ready to free fall. They opened the door.
MM: Pride goeth before a fall. Is that pride there?
(she has been reading Aesop's Fables)

MM: Mommy chase me so I can be TURDIFIED
Me: What is TURDIFIED?
MM: It's where you chase someone and make them frightened.

Thursday, July 23, 2009

Spell It With Me Now: S-T-R-E-S-S

Didn't realize it has been so long since my last post. Can you guess what has been going on from the title? Things that make you go Hmmmm...

Since this blog is mostly about MM, I will start there.

She finally recovered from that raging UTI. We did not get the great time of clarity we usually get post febrile illnesses. Nana (my wonderful mother) & I managed to sneak her off to the beach for a few days. She has been begging to go to Folly Beach, SC since she found it on a map. It was a quick trip there, a mere 6 hours, from landlockedville. She LOVED it. She did great. She just laid at the end of the surf & let it wash over her. She played for several hours. The weather was perfect- slightly overcast, not too hot. We swam in the hotel pool for over an hour both nights. It was the first trip with her that I ever really got to relax for a day. We left on a Wednesday morning & returned Friday. Nana & I wanted to stay another day, she would have none of that. It was time to "go to MM's house". It was fun while it lasted. The ride home wasn't good. There were a few accidents on the interstate, so it took 8 hours to get home. Lots of stimming while stuck in traffic. So much for relaxing...LOL

We have been having major DAFO problems. Our orthotists is pretty great (Big ups to Bill!). The PT made the decision to go to a smaller/shorter brace. I am not opposed to trying it. We went & got casted for new ones. Besides, the tall ones were too small causing blisters & pressure points. I don't know what is going on with Casc.ade (the company who makes the DAFOs). We got the first pair & they were HUGE. So, after trying them for several days and one PT appointment, a call was put in to Bill. They reordered the DAFOs with some mods. It then took another 2 weeks to get them. In all, the girl had been without braces for 7 weeks. The new ones aren't much better. She is having a hard time in them. All kinds of explanations have been given from too big to the shoes over them making them too tight to needing to learn how to walk with less support to needing to get restretched. She complains they hurt all the time. This is the child who never says a peep about pain. They are getting a few more days, the I am demanding a recast and going back to the tall ones.

Due to the lack of DAFOs, growth spurt and her CP, she is having lots of trouble doing long distance walking. She has a push chair for this reason. Yes, it is a Mac.laren Major. She sees this as a stroller. I am informed a million times a day that she is not a baby. She is starting to refuse to ride in the Major, but demanding to be carried or lifted into the grocery store cart. She is getting quite big. The specialist told me that we would need a wheelchair around the age of 6 but I put it out of my mind. "Not my child". Well, we do. I can't carry her & lift her up so high forever. She also can't be stuffed into a grocery cart much longer. She tries to rock herself to move the stroller & pushes off of stuff to get around. I called the specialist to get an appointment. We can't get in until January. Yes, you read that right. JANUARY. We need to get the ball rolling on a chair now. At least the nurse is kind, knows I am not a doofus & took pity on us. She is going to send the order to the insurance company & try to squeeze us into a seating clinic. Now, to convince the hubs that she NEEDS the chair. He lives in denial & doesn't think she needs any assistance.

School starts in a few weeks, no idea who her teacher is going to be. I am trying my best to prepare her. I don't think she realizes how long her day will be. I think she will have a hard time transitioning & has had quite a bit of regression this summer. As I posted before, her summer school is not going as well as last year. She also had an ESY in addition to the private place we put her. Lesson learned for me that she needs ESY. I know they will say she doesn't & has no regression. We will see.

Now, onto me.

Work has been super stressful. We have had some really sick people. In addition to the stress of that, there has been so many changes going on. Every day it is something new to learn & try to remember to complete. We have new residents (it is July) who don't know anything. I have also had someone to orient every single day on top of my assignment. I come home exhausted which leads me to the next topic.

Sleep. I have been having bouts of insomnia. I have also been having bouts of snoring where DH can't even sleep in the bed with me. I had a sleep study two weeks ago. I am waiting for the results. I will probably have to have another one to get a C.PAP machine. UGH. I hope it will help with my headaches, lower my blood pressure, help with my depression & maybe my exhaustion. They kept asking if I was tired all the time. My answer: I have a child who was born premature now with disabilities. I have been tired for SIX YEARS!!!!

DH brother had a heart bypass last week. He is only 42! He has to have another major surgery in six weeks for a bypass on the arteries in his legs. Very scary. I am terrified DH will end up the same way. He is only 33. He has been so worried about his brother. He lost his other brother in a terrible car accident about 18 years ago. He appears to be recovering well right now & even went home earlier than expected.

All of this stuff is giving me major panic attacks again. This is probably the reason for my insomnia as well. I can't find time to go back to the therapist. Maybe when the girl is in school I will. I don't know how much more medicine I can take. I don't want to take any more. I just want to know how to cope all the time. I feel like I flounder every day. When I look around me, it seems like everyone else has it all together. Even the SN parents I know in real life don't seem to be floundering or they are better at hiding it than me.

When does it ever end? I have said it before & I will say it again:


WHERE IS THE GIVE ME A BREAK LINE?

My apologies to all for my lack of posting on your blogs. I do try to keep up with you. I am praying for those who need prayin', thinking of those who need thoughts, laughing along with those who laugh & shedding tears for those who need water works. Thanks to you all for your comments & welcome to my new readers. It is amazing how cool the net is & how people from all over the globe want to hear about our little family. Much love to you all!

Tuesday, June 30, 2009

Viral? Nope.

Been MIA due to MM having another lengthy illness. It involved a high fever- 104.9 in the armpit, vomiting, lethargy, barky coughing, runny nose, a trip to the ER, a trip to the pediatrician office. The ER said it was viral and to wait it out. I didn't really agree with the super high fever. It then continued on for 8 days, finally culminating in a raging UTI. Poor thing. Today is the first day I have seen a glimmer of her in there. She actually ate some food today. I hope this is it & she can kick this thing. It is so hard to guess what is wrong with her, but she actually did finally tell us her butt hurt which lead to the UTI suspicion. Like I said, it it a major UTI. She is on some pretty strong antibiotics for fear of it moving to her kidneys since it went on too long. I am exhausted cause I was up for 4 nights in a row giving meds every 3 hours for her fever. DH has actually let me take a nap the last two days we were off together.

During the illness, the ER doctor gave her phenergan (sp.) for vomiting. It made her severely ataxic, rigid and she kept doing weird things with her mouth. Turns out, it can cause neuro problems for those with neuro issues. I told the ER doc TWICE she had CP & ASD. What part of neuro is that not? I swear, it is getting so scary any more when it comes to dealing with the medical profession & I AM a medical person! My number one rule is listen to your patients or their family. Easy enough? Obviously not for some. Needless to say, we had the crap scared out of us once more. It is only zofran for us from now on & it is listed on her chart to never give her phenergan again.

We keep taking the punches & getting back up.

Saturday, June 20, 2009

Weekend Survival Mode

As I said before, I am really tired. It is the weekend that I am off. Lately, on the weekends I am off, I feel like I am in survival mode. I just try to get by with my sanity intact. MM being out of school is really NOT a good thing. I have tried my best, come up with (what I thought was) a pretty good schedule for her, but I have failed. She stims & melts down so much that I want to stab myself in the eye with a pen. Not really, well the stabbing eye part. This is the first time in years that she has not had an ESY. It is not working for her or us. I am so worn down with patience & my nerves are shot. I really need a break from everything- work, her, my dh, my life.

I want a vacation so bad. Sadly, I want one all by my selfish self. I hear, see & read about everyone having wonderful vacations with their families. That just doesn't happen here. MM can't hates going places. It becomes a lot of work to calm her. DH gets easily frustrated with us, I get really angry with him. (He too is hard to travel & vacation with. He doesn't like to drive long distances & doesn't like to fly- WTH???? Doesn't leave many options for us) I feel trapped here. I feel like I am a horrible mother for wanting alone time. I need to recharge my batteries. I am like a car with a dead battery that hasn't been replaced. I am constantly having to be "jumped" every time I need to do anything. Although, one of these times, I am not going to start.

This is not what I envisioned when I dreamed of having a family. I am so bummed right now.

That is all.

Tuesday, June 16, 2009

EASIEST Giveaway EVAH!

One of my fav blog buddies, who left me some really kind words on the previous post, has lots of give aways. She has one that hasn't closed yet. She still has about 8 spots open. Go show her some love and leave a comment. You will get the give away!

This is great for all you Cheapskates!

Go on, why are you still reading this! FREE & easy I tell ya!

Monday, June 15, 2009

Warning: This Post Uses Offensive (to some) Language

Some days, I just think "Autism, you are an Asshole!". It really can drive me crazy; completely to the edge of insanity. It has been this way for the last few weeks around here.

MM has been constantly stimming. Her favorite stim is language which means we ALL get to "enjoy" the stimming. She stims when happy. She stims when upset. She stims when she gets up way, way too early. She stims when she is overly tired. She stims when nervous. These vocal stims can last for hours sometimes. Here is a mini list of her current favorite stimming statements:

"Up to your room"- this is yelled at full force, usually in bed, either when trying to go to sleep or very early in the morning. Thanks Berenstain Bears for this one.

"How do you wipe Clara's bottom? From the top to the bottom? Yes, never bottom to top. Clara's hygiene is very important"- this one is usually asked of a person about 5 gazillion times a day. Even if you answer, you will be asked this over & over & over. Thanks My Baby DS game for this one.

"What body systems are there? Skeletal, Muscular, Digestive, Circulatory & Nervous"- See above about the frequency of this one. Thanks science book for this one.

These are just a few of them. I am so tired of hearing these. I am just plain tired. She did so well for a couple of weeks. I bragged, boasted & strutted like a peacock. Now, I am just plain defeated, exhausted & sad. This really isn't going to go away. No matter how much therapy we have done, trying to redirect, ignore, etc., it is always going to be here (not just the stims, but everything about it). I don't like living with it. I can't make peace with it or even be its friend. Why?

Cause autism is an asshole.

Maybe I will feel better next week.

Saturday, June 13, 2009

Next Sunday Is

Father's Day! Can you believe it? It is coming up fast. I actually have already bought DH a little something from the Meghatron. For those of you who procrastinate or are at a loss, check this out. This is a neat blog, done by a really cool chic I met on a message board about 5 years ago. She is a mom of 3 little boys & is an AMAZING writer too! I also love her cause we share the same bizarre birthday! Show her some love & maybe you can win this!



SSSSSSShhhh... don't tell her that I would probably buy myself some flowers instead of DH. They have other gifts, but a girl's gotta do what a girl's gotta do!

Friday, June 5, 2009

Anon Confessions

Leaving this up for a little while longer since the comments seem to be slowly rolling in. Keep 'em coming. Get it all off your chest! This is the place to do it. No judgment. I always moderate the comments, so if a troll shows up, it will be rejected. Don't be afraid, just use the anonymous feature.


I saw this on another blog & thought it was interesting. Hers was letting people confess their deep, dark secrets such as "I am meeting a man I met online this afternoon to have s.ex with him". She had them post in the comments section.

I was thinking we could post anonymously our true secrets, fears, anger, etc about having a SNK. It can also be about anything else you want to get off your mind. UNLOAD HERE. Don't forget to use the anonymous feature! Can't wait to read & hope this helps a little. I will post some of mine too, once the comments start rolling in. After all, this is supposed to be juicy stuff!

Tuesday, June 2, 2009

Literally Autism

While working on a puzzle of the US:

Me: Topeka is the capital of what?
MM: Kansas

Me: Little rock is the capital of what?
MM: Are-Kansas
Me: Arkansas
MM: Are-Kansas
Me: No honey, for some reason they say Arkansas
MM: Are-Kansas


While making blueberry muffins:

Me: MM, you have to move so I can get in that cabinet
MM: I moved (as she turns 180 degrees on her step stool)
Me: You are so literal
MM: I not literal- what's literal?
Me: :::silence:::

Sunday, May 31, 2009

Going...Going... Gone!

Yes, she is back on planet MM. **sigh**

I had just made that post Thursday morning how good she was doing. We went to lunch at I.HOP. She was a little stimmy before we left, wanting her Nana. We went & picked her up for lunch. She was doing her directions over & over. She ordered her usual. She got upset cause the lady (not our usual waitress) brought her a small glass of milk. 5 minute meltdown. She then ate all of her bacon & that upset her. Another 5 minute meltdown, but got her to stop by giving her the chicken off my salad. She then was doing her driving directions the rest of the time, along with shoulder shrugs & finger flicking.

As an aside to the above part, at the I.HOP we were at, the booths have see through glass partitions. There was a couple on the other side who kept staring, rolling their eyes & making comments. My mom wouldn't let me say anything to them. I so wanted to. I was frustrated and I just hate people who stare. It is so sofa king rude! I found a cool new statement & I want to make it on a business card so I can hand them out:

Keep staring cause that will cure her Autism and then we can work on YOUR social skills.

Of course, I will add a website or some info about autism. I think a shirt for her would be cool too.

When she woke up Friday morning, she was gone. She kept saying over & over "Do I write from the top to the bottom or the bottom to the top? Top to the bottom" for over 45 minutes. I worked Friday & Saturday, so she was with Mom. She said she was hard to engage, doing lots of stims. She keeps asking to go to Dog.wood (her school). Even though I am doing my best to make a good routine for her, it is not the same. It has only been a little over a week and I feel like I made a mistake. I should have fought harder for her ESY. I know it is only a week & I need to give it time.

It is just so hard to have the clarity gone and her routine messed up all at the same time. It was fun while it lasted. Off to do the Super Family Sunday thing.

Thursday, May 28, 2009

Keep on Keeping On

She is continuing to do well & amaze. She transitioned back to her MDO (mother's day out) program easily. There were 2 girls there from last year that she remembered. She has the same teacher as well. They were amazed at how much she has grown & changed. I know I complained alot, but Ms. X really did do an overall great job in helping MM.

We finally got casted for new DAFOs yesterday. We are going to try a shorter one & see how it goes. I am excited & nervous at the same time. We also will (finally) be getting AFO socks! Woohoo! The ones with the big toe seperator. She has so much eczema from the DAFOs & I have tried all kinds of socks. Hopefully, the insurance will pay for them. If not, I will. We have to try.

Speaking of insurance, they are driving me crazy! They keep calling me about my hospitalization, wanting details. They are also driving me nuts cause we have had all of MMs appointments come up at once. As you all know, insurance is a pain! I am thankful I have it, thankful mine is pretty good, but boy is it work!

I've still got to get her some new glasses. I am not sure how I want to go about it. I might try the Zen.ni site. Or I just might go to Wal.marx, although I am trying to stay out of there.

My mom & I were talking about how she has been "here" & exploded the last few weeks. We think it is due to her poison whatever exposure. It has obviously sent her immune system into overdrive. Just like when she gets a fever & clears, this seems to be going on. We were joking saying we are going to keep her rashed up from now on. I so wish they could figure out what makes her clear with fever, etc. It would be nice, huh? In the mean time, I am just enjoying her. She is such a sweet kid.

Saturday, May 23, 2009

And it Keeps Going!

More bragging here!

We went to the eye doctor yesterday. She did AMAZING! She jumped up in the chair, told them she wanted to see the letters, not the shapes. She didn't even need me to sit in the chair with her. The only time she got upset was when they had to dilate her eyes. That wasn't a big deal. The problem was the nurse wouldn't listen to me about not restraining her. MM HATES to be restrained. If you tell her, prepare her & let her know what is coming, all I have to do is gently hold her hands. Once we got through that, it was only a 10 minute meltdown. She then went back & saw the doctor. He was pleased. Eyes are just a little worse, but he is hoping we will plateau & not need surgery. I will continue to do glasses as long as it works. Not patching for now either. Just drops every now & then for when she starts looking out the bottoms of her glasses. We will dilate for 3 days & see if it stops. If not, then we will have to do patching again.

Then we went to the dentist. We went to the dentist in town who specializes in SN. We were all prepared to go visit & make the appointment for sedation since she is so orally defensive. Well, Miss Thing went right back. They wanted to do a panorex of her teeth. I explained to her about the xray & how to do it. She stood & bit down & did great. We then went back, she jumped up in the dental chair. She hit it off right away with the hygienist. She asked what her name was, what tools she had, etc. The hygienist took the one pointer & MM said "You not gonna give MM a shot are you?". Hygienist said "No, I use this to point & count your teeth". MM opened up & let them count her teeth! Then the hygienist let her touch the brush, etc. MM LET her clean her teeth & paint on the fluoride treatment! The dentist then came in who is a very large, kind voiced man. She shook his hand, asked him to count her teeth. She only gagged a few times. Her teeth look great. We have taken immaculate care of them (his words). No cavities, but her mouth is way, way too small for all those teeth. He said unless she does some serious growing, we are looking at some major orthodontics. Even that news couldn't spoil my mood.

She got her first phone call yesterday from a friend at school. This is the conversation:

Me: Hello?
G: Is this MM's Mommy?
Me: Yes it is.
G: This is G. Can I please talk to MM?
Me: Sure. MM the phone is for you.
MM: Hello? Who is this?
G: It's me, G. What are you doing?
MM: I hanging out with my cousin. We playing.
G: I'm going to give your mommy my phone number so we can play this summer, okay?
MM: Sure. We can play. Mommy its for you, it G.
Me: Okay, G. I've got your phone number from the caller ID.
G: Okay, I will call in a couple days so I can play with her. I live in Knoxville.
Me: Okay, bye-bye.


Too cute! This is the little girl that was MM's peer buddy. We gave her our phone number for summer play date. I was excited she called right away. This little girl also cried cause MM wouldn't hug her the last day of school. She just doesn't hug too often. I got her to give high-fives to her though. MM loves to give high-fives as her way of hugging.

She has really had the best week ever!

How do you top that off?

Nana bought her a DS for her hand/eye coordination & cause she got all Es (which means excellent) on her report card. She picked the My Baby Girl game. She likes to be the mommy. And guess what? She has already figured out how to work the game! :-)

***There was only one downer at the dentist. There were a lot of people there who were foreign. A couple of women were speaking in an unrecognizable language & pointing & staring at MM's braces. I just wanted to scream at them That is RUDE in any language! You can talk all you want, just don't point & stare. I would have thought there would have been more SNK there, but not when we went. It was all typical kids. Note to self, get first appointment of day from now on.***

Thursday, May 21, 2009

Best Days EVER!

Well, the title might be an exaggeration, but no lie. Today was one of the BEST DAYS EVER in my life since I had MM.

Why?

Please hang with me while I brag.

My amazing daughter. The one who was born premature. The one who has cerebral palsy. The one who they said would never walk. The one who they then said would never walk unassisted. The one who they diagnosed as having autism spectrum disorder. The one who wouldn't be able to be mainstreamed until third grade. Yeah, that girl.

She completed & graduated from regular ed kindergarten. Not only did she pass, she superseded all of their expectations. She did it! I just want to jump up & down & scream with my fists in the air:

HEY WORLD! SHE DID IT! WE DID IT!

She also got an award at the assembly for being the Super Site Word reader of all of kindergarten. She was very proud of herself. Her daddy went & watched her get the award- mommy had to work. A couple of her classmates got citizen awards for always going the extra mile & helping her. She loves those two girls & tells me so along with that they are her friends. They love her. The school has instilled such a sense of community in those children & really take care of MM, encourage MM and make sure she does what they are doing & gets where they are going. Her teacher made an amazing video of the year that she gave a DVD to each student. I bawled my eyes out watching it. My baby is a big girl now. She is going on to regular ed first grade with all of her supports.

This day has confirmed our choices. We made the right one for her & us to mainstream her from the beginning. The children are used to her & know how she is & they love her just the same.

Her second tooth fell out yesterday (finally) after the permanent one has been in, so the tooth fairy came last night. She only left a dollar this time. I am glad cause we go to the dentist for the first time tomorrow. We also go to the eye specialist in the morning.

I am feeling better. I worked all day yesterday & part of today. I leave early on Thursdays to take her to therapy. She had a great OT session. She cut, glued, colored & wrote her name very legibly. She interacted & made astonishing eye contact. She had water therapy. She moved her arms & her legs in a true swimming motion for 5 strokes. First time ever! Her therapist was jumping up & down, cheering. Of course, this scared MM and she didn't do it again.

While I was in the hospital for the week, MM & Daddy came up with a wonderful surprise. Again the kid with all of the above mentioned stuff has learned to pedal a regular bike with training wheels. Wooohoooooo! Watched her do it for the first time Tuesday. Yes, I was bawling then.

She has told me a million times today how much she loves me & daddy & nana & pop-pop.

I got a great evaluation at work which means a great raise. I got a guardian angel award at work for giving good care to someone. It is a very special recognition to get & not very many are given out.

It has been a good week. I know this is disjointed, but I just had to share my great news. This is one of the best days that I will never forget. Honestly, ranks right up there in my top 5 of my life like the day she was born, getting married, etc.

With this, I will leave the lyrics to the song that the teacher used on the DVD. I had never heard it before & I LOVE it. I am going to download it (even if it is by that kook R.K.E.L.L.Y. )


"The World's Greatest"
I am a mountain
I am a tall tree
Oh, I am a swift wind
Sweepin' the country
I am a river
Down in the valley
Oh, I am a vision
And I can see clearly
If anybody asks you who I am
Just stand up tall look 'em in the Face and say

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it mmm
I'm the worlds greatest

I am a giant
I am an eagle
I am a lion
Down in the jungle
I am a marchin' band
I am the people
I am a helpin' hand
And I am a hero
If anybody asks u who I am
Just stand up tall look 'em in the Face and say

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it
I'm the worlds greatest

In the ring of life I'll reign love
(I will reign)
And the world will notice a king
(Oh Yeah)
When all is darkest, I'll shine a light
(Shine a light)
And use a success you'll find in me
(Me)

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
[*]It's the greatest
Can you feel it
It's the greatest
Can you feel it[Repeat * while:]
I saw the light
At the end of a tunnel
Believe in the pot of gold
At the end of the rainbow
And faith was right there
To pull me through, yeah
Used to be locked doors
Now I can just walk on through
Hey, uh, hey, hey, hey
It's the greatest
I'm that star up in the sky
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest

MM, you have made it!

Saturday, May 16, 2009

Sweetie

This morning when I came downstairs:

MM: "Mom, I am so glad you are still here"
Me: "Me too"
MM: "I am so glad to see you. Are you better yet? I love you Mommy. Do you love me?"
Me: "Of course I love you & yes, I am getting better"

This was repeated about 20 times already this morning.

That is the best medicine/healing power of all.

It is so hard for her to have me disappear. She wanted to go to Nana's yesterday, but cried cause she kept saying "Mommy won't be here" implying I was going away again. I hope this anxiety resides for her soon & she realizes it was just a temporary leave. Thanks for all the well wishes.

One more thing in regards to MM. Her poor little legs need a desperate work out. She hasn't been to therapy in two weeks cause I have been in the hospital. Her lower legs almost look atrophied. Her daddy tries hard, but doesn't do all the "extras" like I do. Her feet are so down & inward and keep having spasms. This weekend is going to be lower leg boot camp for her. She is not going to like it. We were also supposed to go for a new casting to get new DAFOs. Hopefully they can get us in this week. She needs new ones quickly.

Friday, May 15, 2009

Poison SOMETHING!

We don't know what it was/is. We all somehow got exposed to either pesticides, poison ivy, poison oak or poison sumac. We have all had rashes & I ended up with a severe allergic reaction, spending nearly a week in the hospital. Needless to say, this hasn't been fun. MM is really out of sorts, from the rash & my disappearance. Poor DH has been trying to do it all & realizes how hard it is. I hope to be on the mend & get everyone back in their routine quickly. Wish us luck. I am so sick of bad things happening over here.

Thursday, April 30, 2009

Do I whine too much?

I don't know if I do on this blog.

I sometimes look at all the other blogs & see how much everyone writes about sunshine & rainbows. Don't get me wrong. We have sunshine & rainbows here. At times, they are just few & far between. After all this time, I guess I am still: bitter, angry, shocked, sad, depressed, etc. I have tried some counseling & of course the lovely meds. I guess it isn't enough. I still go through these long spells of dreary sadness.

Right now is one of those times. I feel overwhelmed by my life. It seems we can't get ahead no matter how much time I spend running. I hate that I feel as if I always have to clarify myself to others with statements like "I AM very thankful she is doing well, but...". She is doing amazing & beyond so many others. I feel guilty cause she isn't "disabled enough" at times amongst our disabled friends. I worry so much about the past (which I know I can't change), the here & now (am I doing enough, will it ever be good enough?) and the future (what will it be?). I can't seem to forgive myself for what has happened to my precious daughter, even though I did not solely cause it.

I mostly blog about the bad times cause this is where I "talk" it out, get it off my chest. This is where I come to stomp my feet, pout and scream about things. I guess I just am not a blogger who wants to write about how wonderful it is to live with ASD/CP all the time. It can be rewarding, it can make me feel blessed beyond all others. It also can be hardwork, tedious, heartbreaking and unfair.

I apologize if I am often a downer.
It's my blog and I'll cry if I want to.

Wednesday, April 29, 2009

Literally Autism

MM's new fascination is directions, maps, countries, continents, etc. She always asks "where is this, where is that". We were getting dressed after her bath.

MM: Mommy, where is Argentina?
Me: In South America.
MM: Mommy, where is China?
Me: In Asia
MM: Mommy, where is Antarctica?
Me: Meghatron, I think we need to get you a worl.d atl.as or a globe. Do you know what a globe is?
MM: It's a sphere. (with duh intonation, like why are YOU asking me this?)

Me: stunned silence, then a chuckle

Tuesday, April 28, 2009

Crisis Semi-averted

The IEP went okay. The area that I thought they would bulk on the most they did not. MM will still be restrained on a short bus. They realized that she can't step up on a regular bus alone (DUH), can't be properly supported on a seat in a regular bus (DUH) and doesn't have the trunk strength or good enough protective reflexes to keep her upright with sharp turns, etc or if there was a crash (DUH). I am quite sure we will battle this again next year, but for now, score one for us. I don't know why they make you jump through hoops for something as simple as her safety.

They denied us ESY. Even though the teacher recommended it, they said she did not need it educationally. I still have time to think on this one. The summer program they have offered the last few years was okay, but not great. (The only great thing was the teacher. It didn't offer enough to really help her and it was in the worst part of town. Seriously, a crack dealer was on the corner there in the mornings) We are going to send her back to a mother's day out (MDO) group that she went to last year. The lady that runs the program actually came from the special ed preschool she went to. They take all ages in the summer & do lots of fun things. They also all did a wonderful job caring for MM last year & adapting to her needs. Honestly, they did better than her teacher this year, IMO. I like the fact that she won't be tied down to school per say & we will see how she does. She can go to the MDO when we want or we can not send her. With ESY, they take attendance. If she does not do well when school starts, then I doubt they will deny it next year.

I still can't figure them out. One would think after all this time (3 years in the county) I would have some understanding. I don't. The things I think they will give a hard time about, they don't. At the annual IEP, the bus was a huge battle we were fighting. They just wanted her on regular transportation, no supports or anything. They did a total 180 with that. The ESY I thought was a slam dunk. Wrong!

Thank you for all your kind words of support & great advice.

One more thing. If you get a chance, can you send up a prayer for DH. We had to take him to the doctor today. He had to have an EKG & lab work. He has been having weird spells. They don't think it is his heart. He didn't see our regular doctor either. The fill-in seems to think it is stress/anxiety. I am hoping that is all it is too. I think he has needed help for a long time & is now finally at his breaking point. They gave him a script too, so he is joining the xanax for lunch bunch. Please pray it is something simple. I just can't take any more bad news. I really can't (for i too am beyond my breaking point. i think it is why i can't get well myself).

Sunday, April 26, 2009

Crud

That is how I feel like. Once again, the rotten sinuses have gotten the best of me & moved on down into my chest flaring the old asthma. Yuck.

We have our IEP on Tuesday morning to discuss the ESY & the bussing issues. I hope we can come to an easy resolution. I got some great advice from some wonderful people in addition to a letter from the doctor. Can't see how they can turn down the ESY. Her teacher said she needed summer school at the parent-teacher conference a few weeks ago. The bus is another story. Yuckier.

MM has been really out of sorts. Some of her old "ticks" are back as well as the new ones going strong. Feeling poorly, I am out of patience. I hate that, but I feel trapped by her ASD. This weekend has just been a bummer for me. The weather was nice, actually too hot when you have a cold type thing. I hate that I feel like this. I don't want to be trapped by this. I just need to figure out what is going on with her & help to quell the stims. Yuckiest.

Btw, we ran to Tar.get the afternoon. I heard something that made me so upset that tears started to well. It put things in perspective for me. A cute little girl, probably about 4 was saying "who is going to carry me & hug me now?". Her mother replied to her "just shut up. you are driving me crazy. you don't need to be loved on all the time". WHAT?!? It was all I could do to not tell her to thank her lucky stars her daughter was asking to be loved on and wanting to interact with her. She had a wonderful, healthy, neurotypical child. I wish my child would ask me for that instead of asking for directions for the 5 millionth time of the day. DH was with me, so I bit my tongue.

Yuckiest beyond yuck.

Saturday, April 25, 2009

Awesome Crowns for ABR

Alright. I have a blog I have followed for quite some time. The owner of this blog is Melanie. (her button is the better than normal one on the side) She is a super cool Mom with a huge age range of kiddos, the smallest who has SN. Daniel is one of the cutest boys on the block! Anyhoo, they do some totally cool alternative therapy called ABR (google it. I am lazy today). They make some awesome crowns to supplement for the ABR. You can actually win a set of these crowns right now on Her Blog!

Check it out! If you don't win, how about ordering a crown for your kiddo? I did not get one ordered in time for Meghatron's birthday this year. She even has a cool Mother's Day crown right now.

What are you waiting for? Go on... go enter! BUT be forewarned... I'M GONNA WIN! I have to win something!

Sunday, April 12, 2009

No Coincidences

We had a yard sale on Friday & Saturday. Not so great weather. Friday we got rained out till about 0930, Saturday was muddy, cloudy & got cool. We persevered & got it done. We made quite a bit of money (it was our household & my parents). It was so relieving, purging of clutter & making money for it.

As we were selling, a very kind lady stopped. We struck up a conversation. She gave me a business card cause she is a chiropractor. I asked her about treating children with ASD. She began to tell me the story of a boy, now in his teens, who was non-verbal when he started recently coming to her. Not only did he have ASD, but he had a stroke in utero & has mild CP as well. (Sound familiar?) He now is talking. She does adjustments as well as practices herbs, vitamins, etc. We talked about supplements. I am going to give her a try & see if we have any big break throughs with MM. She also told me about a lady in her 40s who she treats. She has Asperger's & talks easily to the doctor, as she has been coming to her for years. She has a college degree, a job & lives on her own. I gave her my phone number & email address. She said she would speak with the lady & would hope that she could be a mentor for MM.

I am very excited because she has already emailed me. She is actually eager to communicate via email & meet in person. She is willing to answer my questions about living with ASD. She also wrote this lovely comment:

I just want to tell you that doctor's aren't always completely right because I think that the power of the human will and the human spirit can defy a diagnosis and I don't think that anyone can be totally accurate in their assessment of what another can accomplish.

Wow, huh? She sounds pretty amazing & I am very excited to communicate with/meet her. This gives me such hope. It is just what I needed with the impending IEP coming up. Hope.

Having this sale was no coincidence. The Man upstairs set me the good doctor to deliver me hope. Thank you, God.

*btw, the doctor bought my train table & Thomas stuff for kids to play with in her waiting room. really cool.*

Thursday, April 9, 2009

6 Already?




I can't believe it. As I am typing this, the Meghatron has turned 6 today. She has had a great day, enjoying her favorite pizza, cake & presents.


In some ways, time has flown by so quickly. I want to slow things down. She is growing up way too fast, getting so big. Savor each moment, like yesterday. We met one of our dear friends at a restaurant. They brought MM an ice cream with a candle. She blew out the candle. I asked her if she made a wish. She said, "Yes, I wished a happy birthday to me". We all laughed. She laughed cause we laughed, even if it was her canned laughter. (I am proud that she is attempting to pick up on social cues)


In other ways, time has moved so slowly. I can remember the day she was born like it was yesterday. I remember her time in NICU and how raw & numb I felt. I remember the pain my heart felt when she got diagnosed with CP then ASD. I can't forget all the hundreds of hours we have spent in therapy, doing therapy, going to & from therapy. For me, her life has been constantly measured, scrutinized every few months. We measure moments by "inch stones, not milestones" as one of the fellow bloggers says. It is at these times that her life seems to be moving so slowly.


Although this hasn't been the six years I envisioned, it has been wonderful. She is growing and making wonderful progress. Her brains, humor, charm & looks are incomparable. I love her so much & can't wait to see what the next 6 years will bring.


Happy Birthday, cutie!


Monday, April 6, 2009

A GOLDEN TICKET

Well, not really a golden ticket, but an egg. Yes, a golden egg. I know you are wondering why I am posting about a golden egg. Of course it is cause Easter is coming up. But a golden egg... so special.

My sweet girl got to participate in an egg hunt on Saturday. They divided up the groups. They let us out the door first so she wouldn't get trample by the others. She slowly went about her business, having me help her look for eggs. As she would look, some of her eggs would fall out. I tried to get them as best as I can, but the other children kept taking them. The other children were running all over, snatching eggs as fast as they could. We moved off to the far side of the hunt, finding a quiet area with some eggs. She found a soccer ball egg, she found a pink egg, she found a purple egg. Then, off to the side in the grass, she saw a sparkle. She reached down & grabbed it. It was a large golden egg. She remembered the leader saying you wanted to find a golden egg before sending them out on the hunt. What did the egg mean?

She won a BIKE! The grand prize at the hunt. I was so proud of her & so excited for her that I started to cry when they told us what she won. She kept saying over & over "I found the golden egg, got a bike!". She can't ride it. She sits on it & we push her around. She is so happy to have a typical bike. The church was very excited to have a SNK win the egg hunt. It made their day, although sometimes people mean well but say some weird things. She will have her photo up at their church.

So, the moral of this story is slow & steady DOES win the race!

***have pics to post but can't due to the viral illness of my lappy****

Sunday, April 5, 2009

Alrighty Then...

Does THIS mean that I won't have to fight, argue, cry, etc to keep my child on the appropriate bus & get her ESY this year? We have another IEP meeting on the 28th to discuss these things. I can't wait to hear what they have to say. I am getting well armed with some great advice from some super advocates. Anyone else having any advice, please let me know. You guys are the best!

(An aside here- I know I never posted the update from the meeting earlier this year. One of the crazy things they want to do is put her on a regular ed bus. A child who has CP & wears DAFOs along with ASD who is beyond easily distractable. They are such idiots, I swear. I am prepared to take this to the media if I have to, especially with it being Autism Awareness Month & the recent problems our county has had with ASD kids & lawsuits being filed against the school system due to major compromises in safety. I need to post all about this when I get a chance. Don't know when I will though with the lappy being broken)



My computer is very, very sick right now (I stole my mom's lappy). I don't know what is wrong with it. I have done everything I know & it looks like it will be going to the ge.ek squ.ad this week.

Saturday, March 28, 2009

Her Temper-ature

As you have all read, MM has an undiagnosed auto immune disorder. She often spikes fevers & has mysterious rashes. As she gets older, it is getting harder & harder to take her temperature. She loses her temper when we do it. Due to her sensory stuff, she won't take an oral temp. She fights like mad when you do an axillary (armpit) & the ear one is hardly ever accurate. What's a mom to do?

Well, Christine has another contest that will help solve my problem. Go check out her blog & enter her contest for a Temporal Scanner.

I need to win this MORE than I need those cleaning supplies!

Monday, March 23, 2009

More Spring Cleaning

I found another giveaway with more cleaning stuff. It has arm & hammer baking soda stuff. So many uses, not a ton of cleaning products & much easier on the environment.

WooHoo. Hope I win this too!


Now, where is the contest I can enter to get a life or at least something to help my OCD about cleaning?

Spring Cleaning

I so need to get moving on this. It will be summer before I ever get it done. Maybe spring cleaning will get rid of all of our illnesses too.

Speaking of cleaning, one of my favorite blogs is having a giveaway. Christine is giving away a cool Win.dex product. Go check it out.

I hope I win this. I could use some good news over here!

AND I need a life, getting excited about the potential of winning a cleaning product!

Sunday, March 22, 2009

Making a Knot & Hanging On

Yes, we are still here.

Recovery for both of us has been very difficult.

I have been on antibiotics & steriods just about non-stop since my surgery. As soon as I finish a round of antibiotics, I get another infection within 2-3 days. I have to take the prednisone or else I will have an allergic reaction to the one of the few antibiotics I can take (I am only mildly allergic to this one, versus severely allergic to the others). It is just like last time. I am worried. I might have to have another surgery cause it will not drain like it should. I have been at the doctor every 10 days since the my 7 day post-op follow up. Add up all those co-pays plus meds!

MM went back to school for a few days. She got sick within a few days of being back. She was on spring break this last week & has had a fever nearly the whole time. We are going back to the doctor tomorrow. I think she might have an ear infection now on top of her barky, croupy cough. She has been out of sorts, not "here" and EXTREMELY crabby.

We are still looking for that Give Me a Break line.

P.S. don't know if any of you are addicted to Post Secret like I am, but I saw this post card today. my heart felt so much sorrow cause it could have been sent in by my DH. It wasn't cause he doesn't know about post secret, but still...

Saturday, February 28, 2009

Drinking Again!

I don't want to jinx things here. She finally started drinking yesterday. She actually drank a whole bottle of water. She ate a 1/2 of cheeseburger from Mc.Don.alds. as well. She **might** be doing better.

Thanks for all the well wishes. To the anon who posted about her child, thank you. It made me feel better to know that she was doing "normal" things for a child with sensory stuff.

Another problem we have now is pooping, actually lack of. The meds have really made it hard on her & with her CP, she has only pooped twice (tmi here- tiny little rabbit turds) with suppositories in the last 10 days. I will have to give her another this morning :-P If things don't get moving, I will have to take her to our pediatrician. I hope all the water she drank will get in there & help.